The Patient Voice 2025
Inequities in Access to Diagnosis, Care and Clinical Trials in Lysosomal Diseases
Monday, February 3, 2025
15:00 – 16:00 PST
Overview:
The Patient Voice 2025 will be a 1-hour CE-session, held on Monday, Feb. 3, 2025 from 15:00 – 16:00 PST. This session is intended to discuss population inclusion and access to care and clinical trials regardless of diversity and socioeconomics, with a focus on improving patient care globally. The speakers included will strive to recognize individual perspectives and struggles for families despite backgrounds, socioeconomic, and racial barriers, and identify realistic ways to improve opportunities for all patients.
Course Director:
Jeanine R. Jarnes, PharmD, MSc, BCOP, BCPS
Assistant Professor, Department of Pediatrics
University of Minnesota Medical School
Pharmacotherapy for Inherited Metabolic Diseases
Advanced Therapies Department
College of Pharmacy, Experimental and Clinical Pharmacology
University of Minnesota
Minneapolis, MN, USA
Chair:
Terri L. Klein, CNPM, MPA
President and CEO
National MPS Society
Durham, North Carolina, USA
Faculty:
Jeanita Pritchett Clay, PhD, PCC
Chief Scientific Diversity Officer
Office of the Director
National Center for Advancing Translational Sciences (NCATS)
National Institutes of Health (NIH)/Department of Health and Human Services (DHHS)
Rockville, Maryland, USA
Jenifer Waldrop
Executive Director
Rare Disease Diversity Coalition (RDDC)
Denver, Colorado, USA
At the conclusion of this session, the participants will be able to:
- Address the lack of incidence and prevalence data in non-white populations and the need for education regarding patient evaluation and appropriate testing, regardless of racial or ethnic background.
- Identify steps needed to break down barriers for patients who need to access specialty care, including telemedicine, local testing with communication of test results to specialty centers, financial assistance, etc.
- Define deficiencies in current clinical trial design, and changes necessary to eliminate barriers and maximize patient participation across geographies, ethnicities and socioeconomic strata.
WORLDSymposium is presenting the 2nd Annual Patient Voice to be held on Monday, February 3 at 15:00 PST, just prior to the 21st Annual WORLDSymposium Speed Mentoring and the opening event, “Be the Catalyst“. This session will be recorded and offered as part of the On Demand program through March 14, 2025.
This activity is jointly provided by Postgraduate Institute for Medicine (PIM) and WORLDSymposium™
Joint Accreditation Statement:
In support of improving patient care, this activity is planned and implemented by Postgraduate Institute for Medicine (PIM) and WORLDSymposium. PIM is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Physician Continuing Education:
PIM designates this live activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Nursing Continuing Education:
The maximum number of hours awarded for this Continuing Nursing Education activity is 1.0 contact hours.
This activity is supported in part by educational grants from Takeda Pharmaceuticals USA, Inc., Denali Therapeutics, Orchard Therapeutics North America, and Ultragenyx Pharmaceutical Inc.
Grant Support still available.
Disclosure of Conflicts of Interest:
PIM requires instructors, planners, managers, and other individuals who are in a position to control the content of this activity to disclose all financial relationships they may have with ineligible companies. All relevant financial relationships are thoroughly vetted and mitigated according to PIM policy. PIM is committed to providing learners with high-quality accredited CE activities and related materials that promote improvements or quality in healthcare and not a specific proprietary business interest of an ineligible company.